The first of September.
>> Tuesday, September 1, 2009
Today, something shifted in the weather here in Tennessee. Every ounce of suffocating, humid air feels replaced by that crisp, teasingly cool breeze.
Around eight in the morning, fresh coffee in hand, I stepped outside to let the dogs relieve themselves, and it hit me. It's the first day of September, and nowhere near the end of the South's seemingly endless summers, but it was a break in the monotony. A glimpse of what's to come.
For the first time in a long time, I felt like I could breathe. I felt, finally, a genuine sense of calm take over the erratic, stressed, manic demon that had taken over my body the past few months.
There have been moments of relief here and there, but in that moment, sitting on my stairs, watching Louie and Sampson ruin the neighbors' newly planted rose bush with their urine, I had to admit it: I have not been myself recently.
A lot of it is the lack of sleep. The lack of genuine pleasure in what I do, in a field that used to excite and stimulate me to no end. A lot of it has to do with the colossal curveball that was thrown my way about two and a half months ago. A lot of it has been my fear to let go of the past, to accept that my friendships, my lifestyle, my priorities, have all changed overnight without my consent.
But most of it has been my inability to deal.
Yesterday, I had a mini-breakdown.
Upon my gastroenterologist's request, I met with Vanderbilt's colo-rectal surgeon.
For the past year, I have been having tri-monthly in-patient procedures at the hospital for stricture dilation. I was told last year, on no uncertain terms, that 13 years of rampant Crohn's and Colitis have left my intestines in a state of disrepair. Even if my disease is completely controlled, things have gone too far for medicinal intervention. I had surgery when I was 16 to remove a few feet of my damaged intestines, and they were able to reattach everything just fine.
But now, there's not enough of the good part to reassemble. I was told last year that I need an irreversible ostomy surgery, and that it was essentially my only option.
Being the medical rebel that I am, I took matters into my own hands to find another--even temporary--solution.
I have come to grips with the inevitability of wearing an ostomy bag. I might even give in without much argument in 15 or so years, because I don't want colon cancer and, eventually, I think I'll be done battling my digestive tract. But I'm not ready to give in just yet.
My doctors at Vanderbilt told me there was a simpler procedure, called stricture dilation, that could stave off the need for an ostomy for now. They also told me, though, that my strictures were too severe. It wouldn't work on me.
So I went to the Cleveland Clinic, the best hospital for gastroenterology in the world. The doctor I met with there told me without the slightest bit of hesitation that I am too young for an ostomy. He was beyond confident, almost flippant, about his ability to perform the stricture dilation.
And a month after that, he did. Successfully. For almost half a year after that procedure, I felt better than I ever have.
My doctor at Vanderbilt didn't want to be outdone. He is the best gastroenterologist in the Southeast, and so of course he could do the procedure too, and he could have done it all along and "Why did I go all the way to Cleveland when they could have done it right here in Nashville?"
Because you told me you couldn't do it, doc. That's why.
For the next year, he performed those procedures, always with success, every three months.
(My parents are still paying off the gargantuan bill from Cleveland Clinic. As it turns out, my insurance won't pay 100% for out-of-state fees.)
I always knew when I got pregnant, I'd have to decide what to do about my intestines. I just didn't think I'd have to decide so soon, so suddenly, with no preparation.
I've spoken at length with my pareonatal doctor about the procedure. She--we-- decided that the benefits outweighed the risks. Doing it during the second trimester, she said, would be infinitely safer for the baby. Doing it in the second trimester would also, hopefully, prevent the possibility of something more serious happening during the third, like a bowel obstruction or the need for emergency surgery.
So off I went to meet with the surgeon yesterday afternoon, ready to swallow as many potential risks as he could throw at me.
I didn't have my mini-breakdown until the car ride home. Jason was with me--he always insists on coming to these appointments, no matter how inevitably embarrassing the questions a gastroenterologist asks his patients may be.
The surgeon doesn't want to do the procedure now. It's not safe to keep doing them, he told me, pregnant or not. He said it's just as risky to do a procedure in the third trimester, and he only wants to interfere medically if I find myself at a breaking point. And I'm not there yet. So, for now, I wait, and I pray. I give myself the weekly shot of Humira, even though it does nothing for my strictures, and I hope I can make it through.
Leaving his office, I felt what seemed like a culmination of months of worry and stress fall over me. I don't want to wait, to pray, to hope I make it through. I want a solution. I want a definitive answer. I want to go back to Cleveland Clinic, to the doctor who didn't bat an eyelash at the thought of operating on me. I want doctors who understand why I want to try every single option before giving into an ostomy bag. I want a life not plagued by incessant trips to the bathroom and painful injections of medicine and hospital stays. I want to know, above all else, that the baby will be okay. And I can't, none of us can, know any of that for sure.
The breakdown was short lived. I fell asleep early that night (my weekend), and woke up to a new day. I am almost always able to recognize how much worse my health could be, and how amazing my life is. But sometimes, I let myself forget.
3 comments:
Your life is amazing...you are amazing...if you want to go to the Cleveland Clinic...we will drive there and go!
Hey, I am a reader but this is the first time I have commented. The stress and fears and guilt that come along with pregnancy...especially when you are young (btw I am 23 and 27weeks pregnant currently)are overwhelming enough but then to add chroic illness to it seems just too much. Just know that a breakdown is ok. There is nothing wrong with letting some of that fear and guilt and concern out and letting it be loud. You will know what to do and what will be best for you and baby.
I had ulcerative colitis and lost my entire colon at the age of 21. I had a jpouch surgery done so I wouldn't have to have a permanent ostomy. I totally understand what you mean with trying everything you can to live a normal life. In the next few years my husband and I would like to try for a baby, but having all the scar tissue and still issues from surgeries and my disease makes it hard. Do you see a high-risk OB? You are doing awesome btw. Love reading your blog. We are all stronger than we know. You are inspiring. Where do you work nights? I am an RN.
-Sarah Gough
http://www.livejournal.com/~wildflower83
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